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Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study

Owen, Claire E.; Goodman, Susan M.; Simon, Lee S.; Mackie, Sarah L.; Hill, Catherine L.; Yates, Max; Owen, Claire E; Muller, Sara; Graham, Karly; Neill, Lorna; Twohig, Helen; Boers, Maarten; Pujades Rodriguez, Mar; Goodman, Susan; Cheah, Jonathan; Dejaco, Christian; Mukhtyar, Chetan; Nielsen, Berit Dalsgaard; Robson, Joanna; Simon, Lee S; Shea, Beverley; Mackie, Sarah L; Hill, Catherine L

Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study Thumbnail


Authors

Claire E. Owen

Susan M. Goodman

Lee S. Simon

Sarah L. Mackie

Catherine L. Hill

Max Yates

Claire E Owen

Sara Muller

Karly Graham

Lorna Neill

Helen Twohig

Maarten Boers

Mar Pujades Rodriguez

Susan Goodman

Jonathan Cheah

Christian Dejaco

Chetan Mukhtyar

Berit Dalsgaard Nielsen

Jo Robson Jo.Robson@uwe.ac.uk
Consultant Associate Professor in Rheumatology

Lee S Simon

Beverley Shea

Sarah L Mackie

Catherine L Hill



Abstract

OBJECTIVE: To survey participants with polymyalgia rheumatica (PMR) to evaluate the face validity, acceptability, and domain match of proposed candidate outcome measures. METHODS: A structured, online, anonymous survey was disseminated by patient support groups through their networks and online forums. The candidate outcome measures comprised (1) visual analog scale (VAS) and numerical rating score (NRS) to assess pain; (2) VAS, NRS, and duration to assess stiffness; (3) the modified Health Assessment Questionnaire and Health Assessment Questionnaire Disability Index to assess physical function; and (4) C-reactive protein and erythrocyte sedimentation rate to assess inflammation. Free-text answers were analyzed using descriptive thematic analysis to determine respondents' views of the candidate instruments. RESULTS: Seventy-eight people with PMR from 6 countries (UK, France, USA, Canada, Australia, and New Zealand) participated in the survey. Most respondents agreed candidate instruments were acceptable or "good to go." Free-text analysis identified 5 themes that participants considered inadequately covered by the proposed instruments. These related to (1) the variability, context, and location of pain; (2) the variability of stiffness; (3) fatigue; (4) disability; and (5) the correlation of inflammatory marker levels and severity of symptoms, sometimes reflecting disease activity and other times not. CONCLUSION: Participants reported additional aspects of their experience that are not covered by the proposed instruments, particularly for the experience of stiffness and effect of fatigue. New patient-reported outcome measures are required to increase the relevance of results from clinical trials to patients with PMR.

Citation

Owen, C. E., Goodman, S. M., Mackie, S. L., Simon, L. S., Hill, C. L., Yates, M., …Hill, C. L. (2020). Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study. Journal of Rheumatology, 47(9), 1379-1384. https://doi.org/10.3899/jrheum.190575

Journal Article Type Article
Acceptance Date Dec 20, 2019
Online Publication Date Feb 1, 2020
Publication Date Sep 1, 2020
Deposit Date May 15, 2020
Publicly Available Date Mar 29, 2024
Journal The Journal of Rheumatology
Print ISSN 0315-162X
Electronic ISSN 1499-2752
Publisher Journal of Rheumatology
Peer Reviewed Peer Reviewed
Volume 47
Issue 9
Pages 1379-1384
DOI https://doi.org/10.3899/jrheum.190575
Keywords Immunology; Immunology and Allergy; Rheumatology
Public URL https://uwe-repository.worktribe.com/output/5975276

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